A beginner's blog about an early 40-something female who's divorced, a teacher, and has MS (multiple sclerosis) and diabetes. The Messy Stuff in life will be exposed to the sunlight, making it less important and allowing our trusty blogger to enjoy life more.

Saturday, August 30, 2008

Okay, I went to school again Friday afternoon to put some finishing touches on my room so that when I wobble in on Tuesday, I just have some small things to do like reorganize my desk and hang up some more posters. I hadn't been working there long when I caught the image of people in the corner of my peripheral vision.

Normally, when someone is there that I'm not expecting or if someone creeps up on me like these two quiet people, I shriek or yell out with surprise. This time I was somehow able to refrain from that and I just slowly turned and welcomed the strangers in.

It was a mom and daughter coming to visit my classroom and me. This was my first "student sighting" since I've been back in the room this past week. They were both blondes and the little girl was so cute. I could tell she was super nervous, as almost all kids entering 5th grade in my building are for their first year here.

Chatting with her mom and with her made me feel more like a teacher again. I was SMILING during the conversation! Flipping smiling, can you believe that? I was chatting away and making these two feel comfortable in this new locale. I answered questions, I asked questions.

This little girl, unknowingly, helped me find a piece of my excitement in my world as a teacher. As silly as it sounds, this little child led me back to a place where I forgot I was successful and useful and happy.

Friday, August 29, 2008

This is Tysabri. It's not an injection like the other MS meds, so there's no syringe. It's just a vial of liquid gold for many MSers. This is the stuff that costs thousands of dollars, a ridiculous amount of money but for many people this is their treatment of choice. This is often a treatment people move to after trying and failing some of the other MS medications. I've had my two strikes already with Copaxone and Rebif.

I'm hoping that I can afford this medication monthly, that I can find an infusion center with flexible hours and days that work for me and with me, and lastly, I am hoping that this will be like a teeny tiny time machine that will bring me back to an earlier time in my MS when I was feeling much better than I am now. I am hoping for the miracle!

I read another blog, several actually if you look over at the side of this page you'll see the list, and the woman aka Brain Cheese who writes it (who is fabulous by the way!) has been talking a lot about the cost of Tysabri and her insurance. To read more of this, click http://brain-cheese.blogspot.com/2008/08/i-heart-capitalism.html . There appears to be a wide spread of costs for the medication and the infusion center charges.

I know about the infusion centers' charges' variances which really can vary quite a bit. The drill is the same no matter where you go; they have to follow the TOUCH protocol which consists of asking specific questions and handing you the same information each time, hooking you up to an IV to receive the Tysabri, and watching you on-and-off for the two hours that you're there to make sure there are no adverse reactions to the medication. Yet each infusion location can charge all sorts of amounts to your insurance.

My neurologist's office wants my infusion done there, which makes sense coming from a medical perspective and a financial one on their part. However, they only infuse Tysabri patients once a month. One day a month, never on Fridays because they only are open from Monday through Thursday, and you must adjust your life around that one day.

The Tysabri company which is BiogenIdec called me yesterday after receiving the paperwork from my neurologist's office. We talked through a lot of information and I asked about the chance of not being cleared for an infusion on that "one day a month" and then having to wait a whole other month to be infused on the neurologist's schedule.

I had to explain this several times to the representative I spoke with before she could understand what I was saying and she said that waiting another whole month isn't following the schedule. No duh! She suggested we look into alternative infusion facilities which we found through the Tysabri website and there are about 5 others located around the same area, which is about an hour from my apartment home. They're going to look into the availability of days and times and their costs and compare it to my neurologist's office.

That's great, but she also mentioned that I may have to switch doctors if I choose another facility. Why is all of this so darned difficult? I thought the whole point was for me to feel better and do better with my MS. Isn't this all supposed to be about what is best for me, not what is best for my doctor? Sometimes I wonder ...

Thursday, August 28, 2008

Strike two was Rebif. There's a syringe of it to your left. It's one of the three interferons. Those bad boys carry with them more baggage than a drug like Copaxone, not an interferon, in many ways. Interferons generally don't give you the ginormous welts that Copaxone can, though. Welts is a simplified word for site reactions.

Rebif came around in my life in November 2007 after my new neurologist saw my long-lasting Copaxone welts, felt them buzzing hot, saw the fevers, and looked at the latest MRI which showed more lesions. "Let's try something new," he suggested. I went for Rebif which is a subcutaneous injection, like Copaxone and Betaseron. Subcutaneous just means below the skin into the fatty area, not into the muscle unless you make a bad judgment call and get the muscle by mistake. Can we all say, "OUCH!" on the accidental muscle injecting?

I once injected into the muscle in my arm and knew it right away. It's a whole other type of pain that is much different from an IPIR. It hurts right away, usually bruises up nice, stays tender for a bit, and my muscle twitched for a long time with some spasms to let me know (for sure) that that was NOT a fatty area, thank you very much!

I chose Rebif because it was already pre-mixed (like Copaxone), had the smallest needle of the three interferons, was a three-day-a-week shooting schedule, and it was a subcutaneous injection. Avonex is a once-a-week injection into the muscle. Betaseron is an every-other-day injection but needs to be mixed at home before each injection.

Rebif, for me, caused an intensive increase in my depression level. I felt awful while on it, miserable and wishing someone would come drag me out of the hole I was in. I had my anti-depressant dosage increased to no avail. Then I went on another AD and later ended up increasing that to make me feel semi-human again.

Rebif also messed with my liver enzymes, sending those numbers through the roof. I think it was Rebif in conjunction with the myriad of other prescriptions I swallow to stay alert, be productive, fake feeling well, control any spasms, keep my legs from not being too restless, and to try and get to sleep and stay asleep at night which caused the spike in numbers. I was off Rebif for a while until the numbers decreased, some 4-6 weeks or so. I'm too tired to go look it up, honestly.

Then I went back on Rebif for a bit and I am now off it again. I seem to run constant fevers with the Rebif, low-grade ones of about 100.5 which make me feel cruddy. Yesterday was the first day when my body temp was only 99.0 and that was much better. I'm still battling some major depression, even with the meds, because this summer was a waste of sorts because of the heat. Since being on Rebif, my body has felt worse and worse with new relapses.

Regardless of Rebif or not, I am now almost completely heat-intolerant at this point in my MS. My body cannot stand any temperature over about 80 degrees and any humidity that is noticeable drops me to my knees. I spent almost all of my summer inside next to a fan or in the air-conditioned bedroom. I slept for hours and hours for the first four weeks of summer vacation because I am constantly exhausted. My legs have writhed with cramps and spasms I wouldn't wish on anyone. Spasms where my whole leg becomes immovable and the muscles on the back of my leg ripple and crackle so painfully that I can barely breathe. And these spasms last for 30 minutes or more at times. I'm noticing my MS getting worse and truly affecting my quality of life. No one else may see it but trust me, it's there and it's awful.

The Rebif is not able to beat back this messy stuff called MS. It just can't do it. I'm 37 and my QOL is nil. I'm tired beyond belief and not sleeping well again at night. I am stiff and my legs are heavy and hard to move. I probably could have used a dose of IV steroids over the summer but the message I received from the neuro's office was to hang on for another week and repeat.

Here I am on the cusp of full-blown work starting and I am dragging around like a zombie with really bad coordination. I need to head to the shower so I can get clean and then get to school and work on my room. I'm starting to look forward to teaching in my cleaner and more organized room, so that is a step up.

I just want my body to cooperate. I can't afford, in any sense, to be "off" when the kiddos walk in the door next Wednesday. People without MS or exposure to it, or some similar illness, generally can't understand that just the movements of daily life suck incredible amounts of energy out of our banks. I don't recharge after sitting down for 5 minutes. Sleeping eight hours isn't a dream; it's a necessity and that's still not enough for me.

So Rebif is strike two. I came, I tried, it just didn't help me beat back the MS. Right now the MS is winning.

Yesterday I drove out to the neurologist's office to fill out the Tysabri paperwork. I am hoping that this will be a viable option financially and that this will be the home run I have been dreaming of in my labored and interrupted sleep. On deck... Tysabri. If I was a betting woman, which I'm not if you know me, I would put all the money on Ty and let it ride. This HAS to work for me.

Wednesday, August 27, 2008

Strike one for me was the MS drug called Copaxone. This was my first choice for an MS medication; a decision I made while I was in the hospital for three days awaiting the diagnosis that I had already made several months prior.

Yes, it's a daily injection but it doesn't carry with it any of the side effects of the other three injections which are all interferons. Interferons can cause all sorts of wonderful benefits such as free increased depression, buy-none-get-one-free flu-like chills and fever, and a 100% off sale on any joint pain and body aches. Who in their right mind would bypass those freebies?

Copaxone wasn't supposed to do any of that, so I was all for it. I injected my first time on Christmas Eve 2005 in my apartment before I went out to a friend's house. I didn't wait for the nurse the company so generously provides to come and show me how to do the injection; I had the handy packet of information and I had watched the DVD that they provided so I felt secure in doing my first injection all by myself. (As an aside, if you get diagnosed with MS and you're deciding upon an MS drug or drugs, you will receive more information than you could ever want, all packaged in a big binder type dealio with maybe a little carrying strap to make it look ultra-cool!)

I used the auto-injector for my shots, which is a device that gives you a neato way of loading up your syringe (while twisting your body into the right position so you could hit that day's injection spot) and then hitting the trigger button so the needle comes piercing through your skin quickly and easily. I was a pro at the auto-injector.

My body didn't tolerate Copaxone well but I used it for almost two years anyway. I always had large, red, burning, itchy welts after injecting. It didn't matter if I used heat or ice, put gel or cream on after the shot or not, massaged the area or pushed down on it; those welts were there to stay. They came and settled in for weeks so you could pretty much always tell where my last two weeks' (or more) worth of shots had been.

I also had constant low-grade fevers because my body wasn't tolerating the drug well, the welts, and 5 IPIRs. An IPIR is an Immediate Post Injection Reaction. Nasty little buggers, these things come on fast and strong, ergo the immediate part of its moniker. For me an IPIR was within seconds of taking a shot where I would have difficulty breathing, my face turned red, my body felt like it was on fire, and my chest felt like someone was stepping on it. They would last anywhere from 5-20 minutes or so.

There was no predicting an IPIR, no reason for why they would happen when they did, but it was unpleasant the first time so I was smart enough to always inject with the portable phone near me after that. This way I could dial a friend, gasp out my predicament, and listen to them talk calmly while I tried to wheeze my way back to normalcy.

All of the MS injectable drugs are obscenely expensive, well over a thousand dollars for a month's supply, which for some injectable medications may only be 4 shots (Avonex) or maybe 12 shots (Rebif) or every other day shots with Betaseron. MS is not a disease that suits anyone well, let alone the uninsured or under-insured.

One nice thing is that Copaxone comes packed with little freezer packs that you could use again and again and a styrofoam box that can hold just enough food for you and your freezer packs, in the event that you choose to go picnicking!

I also received free, yes FREE, alcohol wipes with my Copaxone. Actually more wipes than shots so that I had a nice bonus supply in the event of any other minor medical malady. I did appreciate that.

Copaxone used to have to be stored in the fridge so that every time you opened that swinging door you were yet again reminded that you had an incurable disease, one that most people can't see, one that eats away at your brain and spinal cord like Pac-Man, one that is kinda tricky to pronounce which makes those of us even without speech issues sound like we're lisping.

Copaxone was strike one for me. I came, I tried, it beat me down. I moved on. Next on deck was Rebif.

Tuesday, August 26, 2008

I am going to postpone the eye massacre known as surgery. I got the final okay yesterday along with the payment amounts and I actually scheduled the surgery for October 9th.

Then I came home and thought about it, talked it over with a few people and I've now decided to put the whole thing off to help save my sanity and my sick days.

I have to get the PRKZyoptix surgery because of my prescription and my large pupils which runs at $1590 an eye. Then you need to purchase this eye plan for 1, 3, or 5 years because down the road I will need an adjustment. I will need an adjustment maybe in 3 months or 6 months or a year or a few years later. An adjustment = just more surgery.

The surgery I need requires that they brush off the epithelial layer of the cornea and then they do something with the laser. After the sloughing off of my cornea they have to put in a special contact which covers the cornea while it heals and the new layer grows back. The contact stays in the entire time, through awake and asleep, and they remove it back in the office.

No driving at all during this period, no working during this period, this time period which could take between 5 to 7 days!

I don't have that amount of sick time to play around with in October which is only the second month of school. I have MS which means I tend to go to the neurologist and other medical providers often. Plus, it looks like I will be starting Tysabri on the 22nd of September.

I have to drive to the neurologist's office tomorrow (about an hour from where I live) to pick up the paperwork and fill it out. I am not taking it home to read it over when I know I will be doing this, unless the monetary aspect is ridiculously pricey. My insurance has been fabulous at covering all my tests and blood work and MRIs so I am hoping for another miracle here.

I will fill the paperwork out, turn it in and the office manager expects to have all the answers I need in about a week. She has told me they only infuse one day a month so I have no idea how many of their patients actually use Tysabri but I imagine I'll be finding it out.

So, although there is Vicodin involved after the surgery (I could be like Dr. House!), I just cannot do it at this time. No matter how I schedule it, it's impossible to not take off at least 3-4 working days. I just can't do that now, not with Tysabri requiring at least a half day off each month, plus my regular doctor appointments, and any other random actually-sick-from-something-else-other-than-MS-days that might appear.

Monday, August 25, 2008

Okay, I know that is an image that some of you may find offensive. It made me laugh as I was searching for graphics this morning so I am keeping it. It's my blog and I'm not always a perfect little lady. I need the laugh because Pac-Man is STILL not working and not much makes me laugh heartily these days.

I do teach students a few years older than this fellow who is telling someone else they are number one, but this sign isn't one that is entirely foreign to my room. It seems like every year there is at least one special bundle of pre-pubescent joy who has discovered the power of "the finger". They use it secretly to taunt others in my room when I turn my back and write on the board, which is not a chalkboard but rather a whiteboard.

I have pretty decent behind-my-back teacher vision for the big stuff but "the finger" tends to slip by me because it's silent and quick, unlike those loud, and thankfully rare, episodes of flatulence where some ten year-old lets one rip during a quiet test or while reading aloud.

It's not really about "the finger" but about doing something one knows isn't acceptable and is slightly naughty. I use it myself on occassion when people do incredibly stupid and asinine things while driving.

Sooooooooo... besides "the finger" this is other stuff rolling around in my lesion-filled head.

1.) The sick pit in my stomach knowing that I have to go to work tomorrow all day and that I need to be in school most days this week. The kids are coming, no matter what.

2.) I'm waiting for the call from the neurologist's office about setting up an appointment to sit down and do the paperwork for Tysabri. We know that my doc doesn't call when I need him so I'll give the office two days, maybe just one, and then call to see if this can be done this week.

3.) Next week is school. No going back, summer vacation is over, get your big girl panties on, get up at the crack of dawn, and hope and pray for the best. Why is this year so different from every other year? Why am I filled with dread and uncertainty instead of delight and a reasonable amount of nervousness?

How am I going to get past this??????

4.) I'm also waiting to hear from the LASIK people about an okayed surgery and then talking about pricing. More money and time going to medical stuff but I hope this surgery really helps and works.

If you believe in prayer, feel free to send one up for me. I can also use any positive thoughts you can send my way. In the typical words of all fifth-graders when they finish a writing assignment:

This graphic doesn't look scary, does it? Of course not. It's a cutesy school with a green lawn and flowers and a nice little bell reminiscent of Little House on the Prairie, except their bell wasn't at the top of the building.

I have mentioned several times that it is almost full-on back to work time and it scares the bejeebies out of me. There's a new schedule this year, a new classroom make up for me because I am now teaching inclusion, and there will be another person in the room with me pretty much all of the time due to the inclusion factor. Then of course, there's the MS, another unwelcome visitor but one that comes along, regardless of everything else.

I'm the kind of person who likes to know what is expected of me well in advance. This year I'll be waiting until the day before school starts to really get a solid handle on things. I have no idea how the whole inclusion process and the new teacher body in the room will work for me until I've lived it for a few days.

I'm praying, hoping, beseeching the universe that somehow this will all come together and work out.

Please let me not forget what I'm saying in mid-sentence; please help me to get everyone's name right so that when I call on Lola to answer, I am really looking at Lola and not someone else. Please help me to remember the new schedule and the times that rule our lives for the year. Please help me to be patient and for my students to have patience with me.

Sigh, even though I live in the snow belt I guess there's no chance of a snow day on September 2nd.

Saturday, August 23, 2008

This is a fabulous postcard which is promoting a show called Art Unites out in Los Angeles. If you take a gander down at the bottom left corner you will view two birds. That, my friends, is a photo taken by my friend J. who lives out in California.

Art Unites is for Art Directors Guild Members to showcase their art. The people in the guild can be involved in graphics like J. is, but a lot of them are set designers and art directors for film and television.

My friend J. is looking forward to seeing all the different mediums represented at the show. The show runs from Sept. 14th through Oct. 5th at the Noho Gallery on Lankershim Blvd. in North Hollywood, CA.

It's a huge honor for J. to have two pieces in the show, pieces which are also for sale, and to have her shot on the front of the postcard.

Friday, August 22, 2008

I haven't been at this blogging business for very long but it's one of the few things in my life that I enjoy that is both free and contains no calories. I've been able to type out whatever I want and some of you STILL read it, no matter the topic.

I mean let's get real, who blogs about the Antiques Roadshow besides me?

I have to say that no matter how you got here: whether by annoying emails from me, linking from another blog, or my shameless self-promotion on Facebook, I thank you. I really, really do.

I like doing this so much and I STILL can't believe that people read what I have to say. I also have to say that I look forward to your comments on here and the emails and messages I get elsewhere about the blog. Keep them coming! Those comments and messages make me feel that this is truly a good thing, not just always for myself but also for others.

On here I can be sort of fearless, which is totally different from real life. I can expose myself (oops, maybe I should rewrite that) in a way that I don't normally. I can come here and kvetch or wax on (wax off) about any topic that I think is important or fun or interesting or whatever.

No one will grade me, chastise me, make me feel less than I am, or look down on me with pity. I escape from my shell and I can just be.

What a good feeling that is. Just being.

It's time for me to get ready to go back to work. I'm trying to gear up for that. It's unbelievably difficult this year.

The heat kills me and today was in the high 80s. Not to mention that I also run a daily temp of somewhere around 100.5 which also makes me feel rather icky. I walk slower, I can't lift things that I could a year ago, and I get caught up and lost in my own words when I speak at times. I need lots of sleep and have fatigue that sometimes doesn't go away even with medication. I have a difficult time focusing and concentrating on tasks.

The other day I had to work for work (surprised by that one, eh?) and we had to basically transfer a bunch of numbers from many different papers on to other papers next to names. Then someone came over and said, "Now do the same thing with this." More papers with more numbers. Then the same person came with other papers and had to explain what the newest set of numbers meant that I was to copy on to my list.

I felt like I was in a room with a cacophony of noise so unbearable that I wanted to cry.

There must have been about 35 people there doing the same thing: talking, passing papers around, finding the right names and numbers and transposing them to their master sheet. It wasn't a problem for anyone else. They could listen to the person speak and keep on working away. I had to stop and listen because I couldn't do both things at the same time. A few years ago, that would not have been a problem for me at all.

Now most tasks take much more focus and any distraction, any noise, any new task added on top of what I am doing can feel overwhelming to me. I was already behind and we had just started for the day. Scrappy little worker that I am, I was trying to keep up, speed up, write faster but it just wasn't happening.

A short while later, we received our big box of student folders that hold other important information that we read through and write down information from them on to our special sheets. Some boxes were on a chair, some were on the floor. By the time I finished the first three tasks we were supposed to do, everyone else had moved on to the folders.

They had picked up their box of folders and positioned them so they could peruse them. Some boxes were on the table now and others still nearby on chairs next to the table. My box, the box I can't lift anymore, is on another table maybe 40 feet away from the table we were working at.

I felt defeated again. I have used that word in various posts. It seems to be the most accurate word that expresses how I feel in these situations.

A stupid box made me want to cry.

I couldn't pick it up and bring it over to the table. There was nowhere to really put it anyway so I ended up working by myself in another area. I wasn't too far away, as I mentioned maybe 40 feet or so but it felt like a chasm. A deep one. A wide one. One I couldn't cross.

I sat there looking out at everyone else and felt different: weaker, slower, dumber, and most definitely not part of the group. I tried to do my new task and the good thing was that it was slightly quieter in this new location. The horrible thing is all the rest of it.

Sometimes I think people look at me and think I'm faking or exaggerating my issues. I rarely talk about my MS at work unless it's clear that I'm hooked up to an IV pole and having some problems.

I worked through two separate IV steroid treatments last school year hooked to an IV pole, one a five-day and the other a three-day affair. It wasn't fun or the ideal situation but I can't take all those days off from school. I use all or almost all of my sick and personal time up each year. I'm not talking about leaving early or coming back late from a beach vacation, either.

There are days when I am driving to work and I am so fatigued that I know I shouldn't be on the road. There are nights that I come home and immediately go to take a nap. Then I wake up and do more work at home until my bedtime. Sometimes I stay awake until nine but more often than not, I'm already asleep by then.

I am hoping that somehow in the next week or so I have left until we officially start school again, that some miracle will happen and I will feel rested and ready and eager to start a new year. I'm hoping that my Tysabri paperwork appointment will come soon followed by the Ty treatments once a month.

I am hoping to get some semblance of my life back and to find my smile which seems to have gone into hiding. If you happen to see it out there somewhere, please forward it to me. I need it, I really do.

Thursday, August 21, 2008

**More of an update added later on Thursday afternoon near the bottom of this post.**

This morning is the eyeball appointment for the LASIK surgery, the pre-op stuff that could last between 2-3 hours. The good thing about wearing my glasses is that it makes me want the surgery more because glasses are good for seeing but get in the way of lots of stuff. Contacts are so much more user-friendly.

I could barely sleep last night. I feel the meds still pulling me in this type of tired/hungover state. I want to sleep so I am hoping for a nap later today.

Possibly, there will be more ramblings later, but in the meantime I am sending out good wishes for an authorization for my friend, B. (I think she is secretly delighted when I mention her. I can feel her smile a little now.)

Good friends are hard to find and harder to keep sometimes. I'm appreciative of the ones I have.

** New stuff** from almost 5 p.m. Eastern time

I survived the LASIKpre-op. Those numbing drops were stinging for just a bit and then you feel nada. One of the last things they did was numb my eyes for a second time, after the dilation, and they TOUCH YOUR EYEBALLS! Repeatedly!!

If you are squeamish then that sounds gross. It might still sound horrid to me if I hadn't gone through it.

The woman did not tell me she was going to touch my eyeball; she just came at me with this thing that had a metal rounded tip and started touching my eyeball in a bunch of places to measure the thickness of my cornea. Thank goodness I wear contacts and don't freak out as things come close to my eye.

Then she did the same thing to the other eye. I didn't feel anything really. That was a blessing.

Finally, she got out what looked like a marker-sized plastic thingie to touch my eyeballs AGAIN a few more times to measure the pressure.

Eyeball touching is now over; I made it home in the bright sun looking like a total dork with sunglasses on top of my pair of regular glasses. But I did it. I amaze even myself at times.

Wednesday, August 20, 2008

I must go to work again today. Two flipping days in a row and it's still vacation. The good news is that I get paid for it. Yippee!

Me versus the neurologist's office

Me: 0

Neuro: 1

I called the neurologist's office yesterday and left a careful message stating that I had doubled my Ritalin (based on another medical provider's advice) and wanted to make sure the neurologist was good with that because I need a refill soon.

I also updated that I feel better off the Rebif, my thrice weekly injection.

I could tell the office person was either going through extra care to write it all down or just pretending to do so because the whole call took several minutes and I had to repeat myself a few times.

I wait for the call back from the office. No dice!

Honestly, why do they even ask me to call and then don't return my call? Is this some sort of twisted version of fun for people who work at doctor's offices who treat people with MS?

The last time I was in theoffice, a few weeks back, I had mentioned the lack of decent customer service skills and that my calls go basically unanswered in a figurative sort of way. My test results disappear, so does my chart, my messages don't get passed on to anyone.

We had our little chat and they said they would work hard to "make it better". Sigh, if this is better, then I don't know what great looks like in their world.

Part of my slowly simmering irritation is that when I was in theoffice last, we had discussed perhaps leaving Rebif and starting a newer (hopefully) disease-modifying treatment called Tysabri.

Tysabri isn't an injection; it's a more complicated way of getting MS medicine to you through a once monthly infusion. You have to jump through several hoops to get the insurance to okay it. There's the payment for the medicine and the payment to the clinic that infuses you.

It requires time off from work for you to drive to the infusion location and then to get the med delivered to you via IV. The infusion delivery covers an hour or two while nurses specially trained in administering this med check you before you go on your way.

You also have to let your last injectable drug "wash out" of your system for a period of time. You have to wrap your head around the fact that this is a newly back on the market drug and can cause some pretty significant side effects and/or PML. PML is an infection or something where things go wrong, verrrry wrong, and can be fatal. It was fatal for a few people when the drug was available on the market before and they're not quite sure why.

Recently, there were two new cases of PML reported in Europe since the drug was okayed to come back out and be used again. The shock waves have been felt around the world of MSers, trust me.

I am just toying with the idea of not being on anything except for symptom meds. No shots, no infusions, no more calling and waiting for weeks for simple issues to be resolved.

I'm just feeling defeated again and I don't like this feeling. People with chronic diseases should get reasonable care; we should all get reasonable health care.

If you tell me to call in a week and I do and you're not there for the week, it kind of ticks me off. When I call the next week and you ignore me again, then I start to simmer.

It's okay, maybe the MS will spontaneously cure itself. I guess I've got the time to find out.

Tuesday, August 19, 2008

1.) Why is it that on most TV news shows they have to announce how many medals the US has versus how many China has? Why do we have to beat them? Is it supposed to mean that we're a better society than they are? I thought the Olympics were about athletes doing their best on the world stage.

2.) I hate the heat. H-A-T-E it. It was in the 80s yesterday and humid and my MS was acting up. I need to call my neuro's office to let them know I doubled my Ritalin and some other stuff. I am soooooooo not looking forward to calling them. That alone can wear you out.

3.) I'm am at school more days than I am not now. Getting up early when it's still summer vacation stinks.

4.) I'm a mess emotionally lately. There's a new learning curve this year that will cause some changes in my classroom and school. I like structure and knowing what's coming.

5.) I'm scared about the whole LASIK thing. It's freaking me out to think that they will cut my cornea open.

6.) The newest Extreme Makeover Home is being built not too far from me. I don't know too much about it but will fill you in when I know more.

Sunday, August 17, 2008

I typed this on Sunday evening after watching a repeat of 60 Minutes on CBS. One of the segments took Anderson Cooper to the Democratic Republic of Congo in Africa. The situation that he presents is one that won't seem at all democratic, once you're fully aware of his report.

It's an amazing coincidence that I saw this show because I am reading a fascinating book of non-fiction titled Between Two Worlds, Escape from Tyranny: Growing Up in the Shadow of Saddam. The author is a woman named ZainabSalbi. Her story crosses paths with the CBS segment on Congo.

In certain parts of the world there is such awful unrest and frightening conditions that we try not to even think about. We know there is poverty, disease, and starvation. The CBS segment focused on a different type of problem between some of the citizens of Congo. The problem: wide-spread rape and the creation of rape camps.

Yes, there are camps specifically created by soldiers to torture and rape women repeatedly. For months. Sometimes with objects.

Unfortunately, this isn't only a problem in Congo.

Back to ZainabSalbi... She is a woman most of us don't know and wouldn't have any reason to know. She grew up in Iraq and her father was a pilot for Saddam himself, but only for a few years. She was known for that reason as the "pilot's daughter" which was both a blessing and a curse.

She explains to people like me, sitting comfortably in the United States, the history of Iraq, its religious divisions and the rise to power of a madman. I have come away understanding so much more about Iraq and some of the people that live there. Read her book for that knowledge alone.

The paths of these two stories cross because ZainabSalbi is the woman behind Women for Women International. To learn more please click on http://www.womenforwomen.org/ . This organization is one that does so much for the women who are raped, often abandoned by their families, and injured both physically and mentally in certain parts of the world.

This is a HUGE problem that most of the world chooses to not focus on. The systematic raping of thousands of women, not even women, sometimes young girls who wouldn't even be in kindergarten if they lived in the US is appalling. Disgusting.

Zainab's organization started its work in Bosnia and Croatia when she started reading about rape camps there in the 1990s. She read about twenty thousand women who had been raped during this conflict. Many of those women were placed in camps where they silently endured being raped on a daily basis for months on end.

No one did anything about it. Not the US, not the United Nations.

Rape is a conscious act of war because it doesn't just destroy a woman, it can destroy families and eventually a society. Often women are raped and their families are either unwilling or unable to care for them, due to societal or religious issues.

Zainab started out as one woman, with her husband's support, and later the support of other people. Her goal was to do something for these women. These women had no homes, no jobs, often no education, no food, no family, and were often pregnant or had delivered babies from the rapes.

Her idea was to provide sponsorship for these women so they could have money and perhaps a new future.

Zainab didn't just read about this problem; she traveled to these areas and met these women. She decided that she could not stay silent about their plight.

You see, Zainab had been silent in Iraq while Saddam controlled almost all aspects of her life. She was silent when she came to the US because of her continued fear, even though she was now thousands of miles away from him.

Zainab has found her voice and has created this wonderful program to help benefit these victims of rape in several countries. Her organization provides micro-loans for women to start their own businesses. They offer training in skills that can create those businesses. They provide education; they provide a chance for a future for the women that the rest of the world forgot.

You can learn more about the story on 60 minutes, how to make a donation or start a sponsorship at http://www.womenforwomen.org/ . Thank goodness for women like Zainab, women who found their own power, their own voice and who are willing to make lives better for others.

Saturday, August 16, 2008

It's one of those shows that you either like or don't. I love the show but don't always catch it. It's generally on during the weekend (where I live) so I can frequently find it during my limited channel surfing.

I can hear you now muttering, "What does she mean her 'limited channel surfing'? This girl already doesn't have a real cell phone and no DVR or Tivo. What is wrong with her?"

I will openly admit that I have the cheapest basic cable service you can get. I pay about nine dollars a month for the major networks, a few PBS stations, one of the CNNs, the Style network, and E. I do not use rabbit ears and I do own a remote for my TV, thank you very much.

Anyway, back to AR...There was a delightful older woman, perhaps in her 70s, who brought a trunk in to be checked over. It turns out to be something from the early 1800s and was in perfect condition. When asked what she thought it was worth, she guessed about $500.

The kicker: it was worth between eighteen to twenty-five thousand dollars! The poor woman was completely flabbergasted and couldn't speak.

Then again, there are the poor suckers who show up with stuff and they salivate with excitement when they realize there item is going to be showcased on TV. Case in point with today's show, when a man had the AR show actually come to his house and pick up this sideboard. He had sent them a picture and AR was so interested in it, they went out and picked it up.

He was hoping it was a real Federal sideboard. Nope, it was a knock-off. A real one would be worth 15 -20 grand. His was worth about $1500.

Another lady brought in a beautiful highboy type dresser. The thing was worth between fifty and eighty thousand dollars. She didn't appear to be at all surprised. Maybe she already knew what it was worth and she just wanted to be on TV.

I love it when someone comes on there with a nice little story about whatever the item is and they find out it's worth a pretty penny. They usually act so amazed and perplexed; that's part of the fun of the whole show.

I have no antiques and don't plan to collect any but watching AR is neat because you get little history lessons throughout the show. And, every now and then, you'll get someone like lady #1 who lost all ability to speak and it just makes me feel good inside for people like her.

Friday, August 15, 2008

This morning when I signed on to blog, I was diverted by my own will to an Olympian's blog which I thought was really, really cool. It's at http://carissagump.blogspot.com/ and is about Carissa Gump who is a member of the USA Weightlifting team. I won't give away the ending here but the pictures of her journey to and within China are waaaaay cool. She's just a regular American and reading her blog made me think that the Olympics have so many great people, stories and events.

Of course, most of the Olympic events are on late at night here in the US and I don't possess a DVR; I know I'm one of about one hundred Americans that don't own one. Don't hate on me for that but feel free to guffaw and mock me a teensy bit but know that I still cannot hear you.

If it makes you feel better go ahead and chuckle because I also only have a track phone. That's right, dear readers, I am going on record here to say that I do not text, access the Internet, or take pictures with my phone. I also do not have voice mail set up on my track phone. I rarely turn it on and it's never actually rung.

I use it to make a few random calls now but it gets the most use when I call parents from my desk at school as our phone system there requires a ridiculous amount of number punching to try and call people who may have a cell (which is almost everyone, even families in the rural area where I work). Plus, the phone at work is attached to the wall by the door, effectively eliminating your ability to try and sit nearby and have some sense of privacy.

But this is the BIG news, what you have been waiting for during the last few torturous paragraphs. Friends, Romans, countrymen and women: I have cleared the first board on Pac-Man!

I did this last night and for only one time, but by golly I did it! Talk about pushing yourself to the limit! My nightly meds were kicking in and after some loud cussing, the impossible dream turned itself on its head, the planets aligned, and I accomplished what I thought was elusive.

Okay folks, this just goes to show you that anything is possible.

Other stuff:

1.) About Pac-Man, I have had some comments telling me to never ever ever get rid of it. Apparently this is a game that lives on in the hearts of other 30- ,40-, and 50-somethings. To play you must use your arrows on your keyboard (they're between the letters and the numbers area). Click on the screen to make it pop out and it will cover up my blog (the things I do for you readers). If you turn on your speakers you will also hear the Pac-Man "music" and this may take you back twenty years and I take no blame if you pull on some leg warmers and do a Flash dance.

2.) In other news not about Pac-Man: Freerice.com is also a big hit with several people on here. If you go to the link below, you may need to cut and paste it, you'll see the the first delivery from Free Rice. The video even starts with kids in a classroom playing the Free Rice game. I know some other teachers have mentioned using it in their classrooms and I plan to do so myself this school year.

** FreeRice reaches Bangladesh **The first consignment of rice bought with funds raised through the award-winning FreeRice site reaches refugees from Myanmar sheltering in Bangladesh...

This really is a legitimate UN program and you can have fun and help the world at the same time! Please stop by, check out the video, and fill up your bowl with some rice to give to others. I am a firm believer in the more that you do for and give to others, the more you receive peace within yourself.

3.) On the getting healthier front, I started writing down everything I eat in a WW journal but not counting the points yet. I'm working my way back to that. I have made considerable progress with fruits and vegetables, as in I am actually eating more of them. I'm also trying to get in more protein as I love those carbs.

I exercise when I can do it physically, mostly starting out with my WATP (Walk Away the Pounds) DVD, then moving into 20 minutes of a restorative yoga pose, and then my stretching for arms and legs. I walked a little more than 1.5 miles last night with the DVD and I did the rest of my "rigorous" program and my legs are not too awful today.

I have some great stretches from my occupational therapist for my arms/hands and some lower body stretches from her and other sources. I was actually able to lift my leg up high enough yesterday to put on my sock without too much trouble. I am really using my yoga strap to get some of these stretches done because my flexibility is about nil right now. I feel some nice changes and I am pleased with that.

4.) My parents have offered to pay $1,000 towards LASIK eye surgery. That came out of left field the other night. I never ask for money, have never asked for it, and never would. This just came to me as a gift and I didn't quite know what to make of it.

I am scheduled for my free consultation next week on Thursday. I know if I can have the surgery that it will certainly cost me more than my parents' donation, but this is something I had thought about in the past. I was just getting ready to go have my annual eye exam, purchase new glasses, and get my contacts which I have now cancelled.

My parents explained that they would be willing to do this because I am having such issues with my hands. I am a tad bit worried that there may come a day when I can't do contacts anymore because all my fine motor stuff is becoming increasingly difficult. So here's an option to explore and I'm not used to being offered something like this. It's a weird feeling to have rolling around in my gut.

5.) This is the end, almost. Thanks readers for pushing me over the 200 hit mark. (Hits are how many times people click on your site.) Someone out there is reading this or parts of this or at least clicking on the page to play Pac-Man. Thank you, thank you, thank you.

I wish you all a wonderful weekend and deft fingers if you choose to play Pac-Man. Don't forget to check out Free Rice, too.

Thursday, August 14, 2008

I paid a visit this morning to another one of my myriad medical providers and discussed the Ritalin incident. I was advised to double my dose and take it all at once so I did that today. This is my little experiment for a few days to see if Ritalin can do something besides make me sleepy. If it works, then I'm to call the neurologist and tell him of my experiment.

If it doesn't work, then no one else is the wiser. So shhhhhhh... be very, very quiet.

We have also doubled my antidepressant to see if that can make me feel more human. Perhaps in another week or so, I may be able to see and feel a real difference in myself and my attitude, MS be damned. I may still have some relentless shooting pain, periodic numb spots, twitching muscles, lack of hand strength, and issues with my legs but I may be able to smile and mean it.

If I allow myself to dream big I can almost imagine a day when I can actually clear the first board on Pac-Man. Of course, that could just be a grand delusion on my part.

Wednesday, August 13, 2008

Today is one of those days where you want to just fast forward past it to the good stuff. I am hoping that there is some good stuff coming tomorrow. I know it sure isn't knocking around in my brain or body today.

School starts soon for me, in two weeks and some change. Normally, at this time in August I am chomping at the bit, itching to get back in to my room to arrange it and get everything set up. Today I feel like that is a marathon of activity and I can't even envision doing it.

I'm not generally like this. I am usually happy, peppy, perky, smiley. Right now I feel completely defeated. I hate it. I feel like I hate me.

My fatigue is at a new summer high and a week on Ritalin which was supposed to "super duper pep me up" hasn't done anything. I sleep through the Ritalin. It does nothing for me.

I make the call to the neurologist's office, a call I really should have made tomorrow because that is one week since my last visit, and check in on the Ritalin wipe out and my week-long Rebif vacation. I am in a bad way, dear readers.

The doctor himself calls back to tell me the person I usually see is out of the office for the week but let's chat about my issues. Here's how the conversation went, not verbatim of course because I have MS:

Dr: I got a message to call you back.Me: I left them information about the Ritalin, the Rebif and the fatigue. Did you get any of that message?Dr: Yes, I see you are feeling more fatigued on the Ritalin. How tired are you?Me: I can take the Ritalin and fall asleep an hour later. I can barely stay awake. I'm sleeping more than twelve hours a day, most days. When I am driving I can barely stay awake. I have to start work in two weeks. I'm really worried about getting through this fatigue.Dr: Okay, just stop driving; that's not safe for you. Take the Ritalin for another week because sometimes it takes a while to kick in. Stay off your Rebif for another week and see if that makes any difference. Call me in another week.

There were more words in there but you get the gist. I wanted to say, "Seriously? Are you even listening to me?"

I know my body and how it's not working and how I feel like I am in a pit dug deep into the earth. I can hardly smile. I am depressed and I know it. I take meds for that depression but how long do I have to deal with this crap? It's been almost all my summer vacation where I have felt like dung. I'm supposed to be recharging my batteries here, not just hoping that the dead ones will make flashlight work.

I was hoping that when I called in I would get some sort of life rope thrown to me. I wasn't planning on being pushed under the water.

Especially after a visit last week when we were discussing a possible move to a new drug, Tysabri. We even discussed IV steroids last week and I hate, hate, hate them and I was going to say today, "Please order me a course of IV 'roids. I'm willing to do anything so I can feel better and be stronger for work."

I came home from doing some summer curriculum work this afternoon and I sat down and cried. I'm just wondering when I'll get to be me again. Apparently it won't be today.

Tuesday, August 12, 2008

Today I woke up, changed the blog around a little, added new parts and switched around others. I am delighted to point out that you, too, can now play Pac-Man either before, during, or after you've finished reading the post for the day.

It's near the bottom right so keep scrolling, scrolling, scrolling.... there do you see it now?

I love Pac-Man and I am horrible at it. I was bad at it when it first came out and I rarely made it past the first board. I played a few games this morning. Good to know that some things never change and I still stink at playing. But, it's fun and shouldn't life have some things in it that just bring a smile to your face?

(Are you one of those players who move your body jerkily to the left, right, up, down and/or yell out while you play Pac-Man? You do know that doesn't work, right?)

I'd also like to bring your attention to a handy site that I can get sucked into that actually does bring good to the planet. It's called freerice.com and it's a game that you can play, or someone older or even younger than you can play. You can also cheat if you have a dictionary near you while you play.

This is a little site that tests your vocabulary knowledge and provides a certain amount of rice for each correct answer. The program is run by the UN Food Program and it's on the up-and-up. Feel free to Snopes it, if you'd like. (Snopes.com is one of those sites where you can plug in what may or may not prove to be a cyber urban-legend and then they'll tell you the validity of whatever email claim you wanted to check out.)

If you are a serious wordsmith or a casual one, this is actually more mesmerizing than you might think. You start off by getting a word (or sometimes a phrase) and four multiple choice answers. You choose the right meaning/synonym and your little bowl on the side gets some rice put in it when you are right. The bowl keeps filling up with each correct answer, twenty grains of rice for every correct answer.

That's all you have to do: answer correctly and watch the bowl fill up. The "game" can be quite challenging and it changes its level of difficulty based on your correct answers. I have heard that it can go all the way down to a third grade level but I just can't lose that many times. I have to fill my rice bowl. I swear I can get on there and find that an hour has gone by.

At least I was feeding someone else and not playing Pac-Man!

I'm always trying to answer one more question, to get to the next hundred or thousand grains of rice. Some of the words will repeat on you so pay attention to the correct answer that they reveal. It isn't timed so you could hypothetically cheat and it would be for a good cause.

Now go forth, do-gooders and fill bowls of rice with your amazing ability to find the meaning of words. Feel free to don your cape and tights or wear your finest pajamas. This is one time where you can have fun in whatever you choose to wear.

Imagine all the new "players" out there right now filling up bowls of rice. This is the power of the cyber-press, people!

Feel free to comment below and let me know what you thought of the freerice. site, or the blog's new look, or of this post. As always, be kind in your words.

It's not usually that hard to leave a comment even though it says you do have to register. You can use any email to sign in and here's another tip, click the picture of the wheel chair if you're having a hard time reading the wavy letters. Keep clicking and it should make the letters bigger and clearer.

By the way, I am one of those people who jerk around something fierce and yell at my Pac-Man gobbler. I bet you're smiling now, aren't you?

Monday, August 11, 2008

Those of you who know me in real life know that I look like a blown up marshmallow woman, a person-shaped peep (minus artificial yellow coloring), a woman who has sucked in excessive air out of the tire inflating machine. I'm not just one of those people who say, "I'm so fat," when I'm really not.

I am fat, big, the o-word which I abhor, ginormous, and most definitely uncomfortable in my own skin. I was scrapbooking yesterday; actually others were scrapbooking and I was sorting all of my pictures (yes, all of them) into my new Power Sort box which my friend B. covets.

If I only look at my giant head in the mirror I don't feel so bad. But when you see yourself in photos from work or with friends, I can see the visual and physical changes. I am the fat girl I never wanted to be.

My life with fat has been going on for a long time. I was born with the cord wrapped around my neck and I was a petite baby. (This is about the only thing my mother has ever mentioned to me about me being a baby.) The doctor said I was going to be tiny my whole life.

Boy, did I prove that man wrong!

I'm petite in size length-wise and here's a crazy complaint for you; when I am thin, petite pants are still too long on me. How is that possible? Probably because I am 4 feet 11 and 3/4 inches which I round up to 5 feet even.

According to those horrid insurance charts that puts me at about the 100 pound range or so at five feet. I cannot tell you the last time I was that weight. Maybe in fourth grade. I am not kidding.

I was a roundish chubby-cheeked kid until I grew into full-blown fatness by first grade. I recall one time in second grade playing outside and getting a rip in the rear seam of my green pants. The rip grew and you could see my underpants! OMG, I was so close to wanting to crawl into the earth and disappear.

I stayed fat and got stretch marks early in my life. If I am going to spill my story with fat and food I might as well bring it all out. That's what this blog is for, to bring the scary hidden stuff out of the shadows and make it less powerful over me by exposing it.

In high school I figured out how to get thin and stay that way. I discovered a crazy whack diet that allowed you to eat 500 calories a day. You read that right, 500, not 1500. My mom, the nurse, said it was okay and to give it a whirl. This was probably the beginning of my body going full-tilt off kilter.

In, I kid you not, three weeks near the end of summer I had lost about 30 pounds. It fell off me because I was eating nothing, swimming and bike riding. I was so hungry all the time; I could feel my heart beating out of my chest.

I remember going to buy clothes for school that year and I felt good; I could tuck shirts in and I felt powerful. I knew I felt better about myself, dare I say I almost felt pretty, and I knew that my mother was proud that I looked good and not just fat.

If you've ever been involved with a whack diet like that, you know you cannot sustain yourself on 500 calories a day. You can gain weight back quickly. Remember Oprah in her skinny jeans hauling that wagon of fat out on stage years ago? Yeah, that didn't last either.

The price of being thin was rather high for me. I turned into someone who exercised excessively and I became bulimic. I started to do aerobics and eventually I became a runner. I did sit ups in my bedroom each evening marking off each set of 50 on a little sheet of notebook paper. I worked myself up to doing 5,000 sit ups daily. That wasn't a typo; I did five thousand sit ups a day. It took me hours at night to complete.

Bulimia became my best friend. I took diet pills, laxatives, and diuretics. I ate and threw up after every meal possible and after carefully planned binges. I smiled through my cracked, painful lips to show that I was happy. Happy to be thin, happy to look normal.

Eventually, others found out that I was bulimic but in a rather astonishing move, I was basically allowed to continue. As long as I looked good, and lemme tell you, I had some fabulousgams, bulimia was okay for me to practice. My legs were my show stoppers. I had great calves and I wore tiny skirts and heels and people would comment and whistle and I ate it up (pun intended).

In college my bulimia got really ugly. My weight ruled my life and I never weighed 100 pounds. I could get to 110 or so but never below that. My hair was falling out, my lips were cracked at the corners and they hurt, I was so weak I almost passed out often. I weighed myself multiple times a day. My campus was small but traversing from one corner to another was a workout in itself. But when you're bulimic you will do anything to keep up the act.

Somehow the college's infirmary and I were deeply involved in this crazy eating relationship. I had to go there every morning first thing to be checked out to make sure I was okay to stay upright and continue walking around. It was that or they called home. There was no way I could risk that call, even though they knew at home, but I couldn't go home again. I had to stay there in Virginia which was a safe place for me at the time.

I started counseling in college. I worked on the food stuff. I battled against letting it go. It made me special, all this twisted eating and exercising. I could control nothing else but my weight and I was terrified of becoming fat. It was only when I was thin that I could be seen in my family. I liked having people look at me and notice how small I was or how compact my body had become.

Eventually, I learned that it was okay to let it go, all the bulimia and the pills and the constant working out. That change makes your body go a little nuts again. It's used to being controlled and then all of a sudden the body is back in charge and it's not so happy about the starving and losing and it wants to get bigger, to have nutrition.

My mother made a comment to me about my body after coming off about seven years of bulimia. She said I looked pregnant and people were talking about me and my body. I was mushy, for me, but not pregnant huge, about 125 pounds at that time but definitely up from 110. I was thinking I finally started to feel okay about me but that threw me for a loop. I was devastated.

I got myself involved in a relationship that turned into my bad marriage. He encouraged me to eat because it was part of his control over me. If I was big then I wouldn't leave and no one else would want me. He knew I was freaked out about my mom's comment so he went the other way. My body was changing and I was feeding it to try and feel better.

Food has never been and will never be the answer.

Marriage and gaining weight went hand-in-hand for me. I stopped moving for exercise for a long time and my body changed dramatically. I left my ex after five years of wedded non-bliss and started to exercise, restrict my eating, and dabble in bulimia again. My body weight dropped and I maintained at a much higher number than in college but I felt strong and I could run five miles at a pop. I felt better and looked more attractive. My family liked me looking better.

I fought back against the bulimia (and by the way, you can be thin or fat and be bulimic) and my body just went nuts again. I haven't treated it very well for almost 20 years now. If I thought sending flowers would help, I'd send dozens to my psyche and my nutritional system.

I gained weight and then even more and more to stuff down the feelings I have. Feelings of not being pretty, not being enough, not being able to please others.

I now have MS and I am so big I cannot stand myself. MS didn't make me fat but it sure doesn't help much either. It makes it hard for me to move and there is zero chance of me running at this time. I do light exercise that takes me out of circulation for a day or two. I still eat some junk food because I throw caution to the wind and hope that the five seconds of sensory pleasure will make me forget how crappy I feel the rest of the time.

I don't know how to live in healthy body. I've never treated my body with the respect it deserves. I've never just been proud of me and not worried about what other people thought.

Sooooo, it is time for me to go back to the Weight Watchers program. I was doing well on it last year and then I fell off the wagon because I was lazy and tired, because I was dealing with relapses and steroids, and because my "elimination systems" decided to go on strike.

It is time for me to pull out my WW materials and start reading again. I have to allow myself the gift of being kind to me, the gift of eating healthy food and allowing my body to just be and work with what I am doing.

I have to allow the scale to not dictate my mood and to allow the feeling of well-being to wash over me and relax. If I listen very carefully, I think I may be able to hear the voice of a thin and healthy person inside me whispering words of inspiration... "You can do it. You are okay just as you are. You do not have to prove anything to anyone. You are loved and it's time to love yourself back."

Sunday, August 10, 2008

We all get tired, sleepy, run-down, or in need of a nap from time to time. Many people with multiple sclerosis have big issues with fatigue. I'm not talking about I didn't get enough sleep last night; I mean I can barely walk around my apartment, my words are slurring, and I have to go back to bed to rest before I do a face plant.

Fatigue and being tired to the point of exhaustion has been a problem of mine for years. I can recall being in high school and in college and sneaking in naps before or after work and classes. I was young, thin, and muscular then because I ran and worked out often. But, I was always tired.

Now here I am at age 37 and there are days where I have slept for something like 15 hours or more in a twenty-four hour period. Some days I take all my meds at night and sleep for 6-8 hours and bing, I am up and ready to go. Those are usually the days when I can't fall asleep right away and I have something going on the next morning.

Then there are the other days when I perform Olympic napping/sleeping. I take my meds at night, struggle up the stairs and almost pass out on my bed after yanking on my CPAP mask and strapping my arm splints on. I may sleep a solid 10-12 hours without hearing anything from the outside world.

I have a cat, Franklin, and I adore him but if I start to move in the morning, no matter how imperceptible to the human eye, he sees it. He starts to make a loud meowing type noise. He repeats this noise at frequent intervals until I haul my weebley body out of bed.

On the really tired days I stand up, the world is whirling and I am trying to focus and maintain a move I call "open eyelids". I slowly maneuver myself down the stairs and dump hard food in his bowl and scoop out some soft food. Then I drag myself back to bed.

I may sleep for another two to three hours until I gaze over at the clock, once the CPAP mask has been removed and my glasses are on. The clock could read 1:30 in the afternoon. Sometimes I am now able to get up and actually propel myself towards the shower.

Other times, I clomp down the stairs, drink some water and eat something while viewing the TV for an amount of time that could be 30 minutes to an hour. Fatigue, sneaky devil that he is, creeps in again and forces me to plod back up the stairs and sleep until 4 or 5:30.

If I am having one of these days and I speak with a friend on the phone, they know I am in the thick of the fog. My words slur and I make cognitive errors, swapping words out but making enough sense for them to get the gist of what I am saying. Later, when I am finally clear and cogent we laugh about what I said and thank the powers that be that I didn't have to drive anywhere.

How do you fight something like this? I take medication designed to keep me awake, alert and therefore employable. The problem is that it eventually stops working because my body gets used to it. I still go home after work and nap because my body is screaming for rest.

Sometimes people say I look tired. I almost wish they could look inside my weebley shell and see how difficult it can be to just live a "normal" life. I cannot predict which days my body will beg me to keep sleeping. If it comes during a work day, that's just too darn bad. I hope that the meds do their job and I am clear enough to make sense by the time the real work starts.

I'm a happy-go-lucky person by nature but it's so difficult to project that when I can barely concentrate on what is going on around me. This type of fatigue sucks your quality of life right out the window. I go to work, come home to nap, get up and do some work at home, and then head off to sleep around 9 p.m. Repeat five days a week.

People wonder why I don't go out and do more when it's the weekend. People wonder why I sometimes say, "I just can't do that." It's because there is an invisible cloak that I wear all the time. Its name is fatigue and even with lots of medication I can't take that garment off.

You may not understand MS until you or someone you know gets MS (or a similar illness) but trust me when I say I'm tired. I mean exhausted, drained, beyond belief tired that I wish on no one.

Saturday, August 9, 2008

I woke up, took a shower, got gussied up (styled my hair and used Chapstick) and decided to get my act together so I could head to the grocery store for a few items. I had this particular brainstorm because I saw the store ad on the kitchen table.

First, I had to figure out how much money was in the grocery checkbook because there were some ATM slips that needed to be recorded. I snatched the big pen and the pencil with the grip and the calculator and did my mathematics. Grocery checkbook done.

Then I had to figure out how much money was in the other big summer checkbook because the two checkbooks were next to each other in my purse and I had all the stuff out to do the figuring. How satisfying to be so productive first thing in the morning; okay, in reality it was now about ten thirty but it was still in the morning.

There was a little side trip to the shredder to shred some ATM slips and other stuff I had waiting to be shredded.

After that, I decided to clip coupons from the last two weeks' worth of Sunday newspapers just in case there was something that could be used for this trip.

While clipping, I noticed an ad for Empire Vision and I went back into my purse to get my date book because I wanted to schedule a time for my eyeballs to be examined and to get some new glasses. My date book contains no romantic dates, only appointments for the really exciting stuff in my life like doctor visits, OT visits, and summer curriculum work.

I called EV and set an appointment for the eyeball work and dutifully noted it in my non-romantic date book.

Next, I searched out my coupon envelope, found it by the computer, and decided that I better go through and get rid of all the expired coupons. That proved to be most everything in the envelope. In a concentrated effort to be more organized, I put the remaining coupons back in the envelope according to the aisles of the grocery store.

I made a random list of items to purchase without actually looking to see what I did or did not have and put the list in the coupon envelope and all of that in my purse. Grabbed the Netflix envelope to drop off at the post office and then I decided I should pay one bill that was coming due soon.

Off I wobbled to get the bill bundle, find the bill I needed, grabbed an envelope and stamped and sticker addressed it, and went back to sit down. Filled out the paperwork and put it all in the envelope which I had to lick, ack.

I needed to grab the bags the store sells that you use in place of the hundred plastic bags which they will use to bag your assorted purchases. I was now what we call READY TO GO.

I went to the post office and I swear, I just now remembered this, my best friend sent me a card which I didn't open yet. Okay, you don't know this but I just stopped typing to go open up the card. It is a card with a wolf on the cover and inside she put a stick of gum and a newspaper article about our favorite TV show, Wipeout. This will sound like an incredibly stupid gesture to some of you but from a best friend it's exactly what I needed to make me smile.

I shopped and noticed my wasband's (ex-husband's) mother and brother in the freezer area. I tried to deftly avoid them and moved to the next aisle. They followed shortly after and I pretended to be deeply absorbed in the numerous flavors of yogurt. They passed by and I went back to the original freezer aisle.

Then I checked out, came home, and put the groceries away. I ate lunch (no breakfast) and then went to sleep for several hours. (I'm thinking that switch to Ritalin for alertness may not be working so well.)

For some people with multiple sclerosis or other illnesses this trip can be akin to climbing Mount Everest or even any really tiny mountain. Some days a trip like this with all this precision pre-planning can be impossible.

Friday, August 8, 2008

I am so not Dear Abby; I'm more of a roundish type female that occasionally learns intelligent stuff in spite of myself. So here's some advice that you can take or not, because I'll never know the difference.

1.) Do not get married to someone if you have any tiny, minute, microscopic doubt that your intended may not be the one for you. Even if it's the morning of the wedding, even if you are at the end of the aisle waiting to waltz down past the two hundred people you invited, even if you are on the altar looking at that other person. Do not get married; that is a command.

Just don't do it. Say no; it works for Nike and it can work for you.

2.) If you don't have good life insurance or disability insurance and you are healthy get it now. Run thee to the telephone book or go online but do not put this off. In the event you are diagnosed with any sort of major illness, acquiring the aforementioned types of insurance can be costly or perhaps even impossible. Most people don't think about it until they get sick and by then it can be too late.

No one thinks they'll get sick and carry around some awful illness that may or may not go away with pricey treatments. But, on the off chance that the Murphy's Law of Illness stick slaps you on your chosen head, you'll be prepared, financially at least.

3.) Cut yourself and others some slack. This includes me; I need to cut myself some slack. I'll gladly do it for most other people unless they do something completely idiotic in traffic which earns them a special signal.

Women especially are great at knocking themselves about for a variety of transgressions: too fat, too thin, too tall, too short, in possession of curly hair, straight hair, long hair, short hair, no hair, brown eyes, green eyes, contacts, glasses, a penchant for eating junk food, not spending enough time at work, not spending enough time with the spouse or the kids.... I think you get the idea.

Isn't it smart to just treat yourself with a little kindness? Most of the world isn't knocking at your door with a pedicure certificate or one for a round of golf. If you're waiting for that to happen, you may be waiting for a long time. Love yourself from within and then go get your nails done.

4.) If you read a lot, it's okay to read stuff that is not always "epic literature". I mean, someone out there is reading this right now and it's certainly not epic literature. I do advise perhaps rereading some of what you probably read in high school that made no sense then but through adult eyes opens up a world of new meaning. That damn Gatsby, all for the love of a woman and look what happened to him!

I read chick lit and by golly I am proud of it.

5.) Come check this blog often. Sometimes I am just brilliant and these words are just what you need to escape real life for five minutes.

Feel free to leave me comments if anything moves you or made you laugh. If you're going to heckle me about content, then I ask that you please refrain from curse words and try to give me constructive criticism. I know I change my tenses as I write but that's part of my author's craft. I can do that kind of thing and get away with it.

Thursday, August 7, 2008

This will be a short entry because I'm on vacation, woohoo. As mentioned in today's title, I could have saved hundreds of dollars with this vacation. "How?" you ask. Inquiring minds desperately want to know.

Rebif is a medical drug that is used to try to halt the progression of multiple sclerosis (I think that's what it's supposed to do). It's a shot given subcutaneously (into the fat which I have lots of, not into the muscle) three times a week. My recent invoice shows that 12 syringes of Rebif cost the insurance company $2,039.92.

Thank goodness I have great insurance and my co-pay is a mere ten dollars. Most people are not that lucky and pay far more each month. Some people have no insurance at all and try to pay for this out of pocket.

One week of Rebif could have cost $509.97.

Today's medical provider-patient discussion covered the fact that my QOL (quality of life) is somewhere above lichen and one-celled organisms. It's far below what it was six months, let alone a year ago.

There was discussion about a possible move to another MS treatment called Tysabri which isn't an injection. It is a once monthly infusion, something Sally Field can probably get behind with her strong interest in Boniva. (I mean who could possibly remember to take one pill a week for a whole month. I mean, that is NOT easy, my friends.)

Tysabri will probably cost me more than ten dollars but if it will help me to regain my QOL, then it deserves some serious consideration.

My doctor mentioned that you can't tell I have MS by looking at me. I don't need any assistive devices and outwardly I'm just weeble-shaped. Surprisingly, my muscle tone is good which is probably what allows me to get around as well as I can in my wobbly manner. However, it doesn't stop the neuropathy or burning pain in my hands, my overall loss of strength in my limbs, the crushing fatigue which makes me sleep at times for up to 16 hours, the spasms in my legs and the rest of my body, or the feeling of wearing a terribly tight brassiere. (I bet Sally Field doesn't know about any pills for that!)

Wednesday, August 6, 2008

Family. That one word can evoke many emotions, thoughts and memories. I hold my family close to my heart, all of them; I really do in my own way.

My family is a mish-mash of sorts. I have two fathers, one biological and another who adopted me when he married my mother. Of course, we also have to add in my mother.

My biological father has been remarried for many years and he has three other children. My mother has two other children with my adopted father.

I am the only one that is a product of my mother and my biological father. I look like my bio-dad, which is short and weebly. My mother is much taller and thin.

I look nothing like my half-brother and half-sister that I grew up with. They are blessed with the tall and thin genes of my mom and adopted dad. "Why couldn't I have received just an inkling of the thin gene?" I cry out to the cruel universe.

Have you heard that phrase "the elephant in the room"? That's ME. Well, not literally but definitely I am the figurative elephant in my family.

I grew up in the family with my mom, adopted dad, and two siblings. Never did we mention that I was the offspring of another man. In fact, my mother refuses to talk about him or tell me anything about my young life. You see, it's not my business.

Not my business she says. Wow, call me crazy but I thought I was somewhat involved there.

There are no baby books about me, no baby pictures of me anywhere in the entire house. I think pictures of me show up from about the time my mother remarried. I was four and a half and I am in the picture of their wedding as a very reluctant flower girl.

I knew I had a different father from when I was very young. I was a bright and perceptive child who heard things, read things, knew things I wasn't supposed to know.

My mom never mentioned my biological dad, who still lives in the same town my family does, until I was in sixth grade and I had discussed this issue with a friend. This friend's mom was a friend of my mom. My cover was blown.

My mom said I could see my dad if I wanted to, but being the perceptive and intelligent child I was, I knew that she didn't really want me to see him. She was just trying to cover her tracks. I was not only bright but I was very much a people-pleaser at this age. I wanted to make my mom happy and by this time in my life I wasn't doing very much of that. I was too shy, too fat, too needy, too much to deal with now that I had a younger brother (whom I love very much even if he doesn't realize it) who took up a lot of parental time.

To my knowledge, this subject has never been brought up with the siblings that I grew up with. They know but I'm not sure how they know. Perhaps through their own keen powers of perception. Then again, it could be that my two half-brothers were friends at a young age. That must have made my mother a little antsy.

I have tentatively started a relationship with my biological dad. I talk to him on the phone occasionally. I saw him once for dinner in 2000. Then I ran away from him as fast as I could. He is the polar opposite of what I know about families.

His family has pictures and videos of me from when I was a baby!

Pictures in the house displayed, not hidden away or thrown away. Everyone in that family, children included, not only knew about me but knew all about me. This is a family that is interested in getting to know me.

How on earth does a person reconcile that with what they have experienced for so many years? It's a tight rope, a careful maneuver getting to know them. I told my mom recently that I talk to my bio-dad on the phone. It's taken me years to get up the courage to do that, to say to my mom that it is okay for me to get to know the rest of my family.

The elephant sees the cage door ajar and noses it open a bit. It looks outside, to the left, to the right, to see if anyone is coming with the keys. One step, then two, then faster movements away from what has confined it for so long.

I'm looking around, finally able to see that I can go outside and that maybe it's not such a bad place. Maybe I'm not a bad elephant after all.

My first award!

Weeble Girl

About Me

I'm divorced with no kids, just turned 40, have one awesome cat named Edison, a career in education, a desire to write, and a diagnosis of multiple sclerosis and diabetes. I look a lot like a weeble and I often get wobbly, ergo the name above. The good news is that I always bounce back up when the rough stuff hits me.
My new motto: When life gives you messy stuff, start blogging.